To Mainstream or Not to Mainstream?

Fearing the worst, Adam and Kristina meet with Dr. Robertson, the principal of Footpath, Max’s school. But the news is good, great even. Max is doing so well, they’re having to look for new ways to challenge him in the classroom moving forward. In fact, Adam and Kristina might want to consider transferring Max to a school where he can reach his full potential both academically and socially – i.e. mainstreaming.

Have you mainstreamed your child? What has your experience been? Did your child grow academically and socially?

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My son has PDD and has been mainstreamed since Kindergarten. This year (6th grade) is the first time we made any adjustments to that by putting him in a 15:1:1 classroom. He is still in a public school, and spends his exploratory subjects (health, art, music…etc) and lunch in the mainstream, but has the bulk of his day in the Special Education classroom. He does have a number of social issues, but I am in a wonderful school district that works very hard to assure that he is able to grow and achieve to the best of his abilities both socially and academically :)

We have recently moved to a new state. Previously my son was in a virtual academy and he excelled in the academics. He had excellent social intereaction, so we thought he would do well if we mainstreamed. The issue is, the public school system is not equiped to work with an Aspergian. At least not where we live. So we have brought him back home and he is enrolled, once again, in a virtual academy. I am now wishing, for my sons sake, that we had not moved. The state we were in has just passed some excellent laws in support of Autism. This state does not have enough help, at least from what I have encountered. I wish we had someone like Abby on Parenthood to help me figure things out!

I wouldn’t want “an Abby” in our life. My AS son gets services from public school BUT, I also take him to speech and occupational therapies, where they work with him one on one in their offices. He is able to make the transitions from home, to school, to therapy sessions pretty good now. He’s only 6 yrs. old and was diagnosed “fully” at age 5. We’ve had our “bumps”, but worked through them ourselves…as it whould be. I find myself giving “the authorities” assistance in understanding my son better than they do toward us. happy giggle.

I agree. We gave our public school system the old “college try,” from Kindergarten through 6th grade. As my son is quite high functioning with Asperger’s Syndrome, there is no reason why mainstreaming shouldn’t have been a good fit for him, as long as he received some very basic, consistent supports. But our district was not equipped or willing to give him what he needed at school, and it was extremely frustrating. My son is very bright and very high-achieving academically, but he needed help receiving directions, following cues and staying on task, but no one would give him the support he needed, and he spent most days at school doing ABSOLUTELY NOTHING (actually, he got really good at origami and extracting leads from pencils…). Because he wasn’t a classroom nuisance, he just got ignored. The only accommodation he received consistently was that he was given extra time to complete standardized tests, because the school discovered that when he was allowed to finish them, he scored in the 99th percentile, and it made them look good. Our district was extremely deft at putting off parental requests for help, not recording data on our son’s progress and then claiming they didn’t have “data” to substantiate requests for accommodations; and for any accommodation that was granted and written into his IEP, they delegated the job of executing it to the school librarian, who was completely clueless, with no special ed. experience or training whatsoever. Her only written instructions for working with our son were to “help him get started with his day.”
Anyway, both my kids are currently home-schooled, and they attend classes at a terrific home school co-op 3 days per week, which offers appropriate academic levels, accommodates all types of learning styles and has an average teacher-student ratio of 1-6 (which allows for an ideal, manageable social setting for my kids to thrive in and develop trusting relationships with their instructors).

About the show, Parenthood, I found myself becoming very frustrated with everything about the way it tried to portray AS, especially the way the kid has dark circles under his eyes as if he were ill, and he acts completely emotionless and flat. A huge misconception about people with autism, is that they don’t have any emotions, when in fact, they are deeply sensitive and concerned with right and wrong, but they have difficulty modulating and expressing emotions in ways that make sense to others. Though their brains may not allow them automatically to see a situation from another person’s perspective, this in no way indicates that they do not CARE about how their actions/behaviors affect others. On the contrary, they have to work even harder to exhibit “feelings” that come intuitively to most people, and they must experience the constant frustration of not being understood. In other words, a deficit in “empathic ability” is not equivalent to an inability to feel emotion or have concern for others. I’d like to see the T.V. show that can get this message across, rather than portraying someone with AS as a purposely self-alienating and impenetrable automaton with a cold, hard shell, who can only be reached by poking a series of sticks at him. Parenthood has not been in any way reflective of our family’s experience with autism, and it pains me that the very purpose of the show — to raise awareness and de-stigmatize autism amongst a public that doesn’t know any better — is undermined by actors and writers who don’t know any better… As of the point several months ago when I stopped watching it, the show only harped on all the difficulties and “disappointments” of dealing with autism, without emphasizing any of the blessings of being able to get a glimpse of the world through the eyes of someone who never misses a detail. Our “neuro-typical,” watered-down and filtered version of existence really does pale in comparison… In all fairness, I tend to get impatient with misguided or partial information in any circumstance, and I’m probably not appreciating the merits of what Parenthood is at least attempting to do… Too bad the public school system does not employ that much effort into improving the lives of real children, whether or not they are considered to have “special needs.” Thanks so much for this forum for me to put in my 2.5 cents! Best of luck to everyone in making the best decisions possible for their kids’ well-being!

Maglenny Alcantara

April 20, 2011 at 8:44 pm

Thanks for the great post Steph! I found it warm and enlightening. I admire your courage and hope that I will be blessed with the same in the years to come. My son, Jordan age 4, has recently been diagnosed with Autism and I am scared for him and me. He goes to a school that specializes in educating AS children. He gets Occ. and Speach therapy several times a week, but now I’m thinking I should be doing more. I will be doing my homework on the matter, and I am sure the answers will come to me. Thanks again for sharing your experience, it was very helpful for me.

My daughter was diagnosed with Asperger’s a few weeks ago and is extremely high functioning to the point of being unbearably bored by the curriculum in the public school she attends. I have a meeting with the head over the special education program for our school district but have been told that I will probably not get far. She is in the 6th grade but tests in college level. What virItual academy do you use, if you don’t mind my asking and do they get to work at their own pace? She really needs more than I think public school can offer and I am not sure in what direction to go.

Mainstreaming is extremely important. Once our children graduate they will be living in a “mainstreamed” world. Won’t years of working alongside diverse children/young adults everyday, interacting socially, learning from each other, far better prepare them for what lies ahead? If our children have tools from an early age, they will be much more successful and happier in the end.

I was not surprised about the outcome of the show from the perspective of highlighting a child who is high functioning. When your child has scattered skills and is in an integrated program, the challenges of which path to take present themselves daily. Are the benefits of the integrated program outweighing a more therapy-centric program? How do you know? The direction is tricky. I think many parents would love to have the challenge the show presented all day long versus more typical realities. Thank you for collecting input!!!

My son is 16 and a sophmore and has aspergers. He has always been mainstreamed until this year when he was put into the alternative program at school. He is still struggling so we are thinking of putting him in a therapeutic school for kids on the spectrum for the rest of this year and his junior year. Hopefully he can mainstream back into his local high school his senior year. Any thoughts?

My grandson age 3 has lived with me and his young mom since birth. He had regressed 3 days after his 18mth serious of shots. He started clapping with his fists and lost his words. I researched early intervention, got him in an Infants and Toddlers Program, got a speech therapist also after being diagnosed on the Autism Spectrum. He was just re-evaluted, met his goals and just start a special pre-school program for high level autistic spectrum. He is talking but still can’t say a few letters, very intellegent and has stopped spinning,and watching things spin and now my tears are of joy, not dispair. I have a slow growing brain tumor and was ready to lay down and give up. He gave me a new cause and a reason to live. Its Boen’s World now. Thank you for letting me share his story! from his proud “Diah” he cannot say grandma yet)

My 13yr old son has been mainstreamed since K-4. He goes to a wonderful private christian school that has K-12. The school has always been awesome with meeting his needs. This year, middle school, the social struggles have reared their ugly heads. The school is working with him to help with these issues also but middle school even under the best of circumstances is usually a un-fun time for kids. We are lucky to live close to excellent resources, Teaach in Chapel Hill NC, & they have worked with my son & been in contact with his school. It isn’t always easy but I know it could be so much worse if his school wasn’t so helpful.

My son will be in Kindergarten next year and I am incredibly nervous about him being in a mainstream classroom. He does very well academically, but his social skills and behavior need work. I feel like him being mainstreamed will help him be more successful with the appropriate accomodations and behavior plan. Ive brought up all my concerns to his school, and I hope they continue to work with me like they have been! :)

If you can, take him to and from school yourself, daily. This way he has no chance of being exposed to bullying, teasing, or any oddities he may not like during the bus ride. This way, you will be able to speak with his teacher daily, too. When there are “bumps” in his daily routine, you’ll be right there side by side with his teacher guiding him, helping him understand. I also do not rely on the school system to completely service my son. I take him to speech and occupational therapy prior to his half day of school (three times a week). Just get referals from you prediatrician.

Academically, i’ve not been worried much about our son. He’s been reading since age 3, and gets good grades. We mainstreamed through 4th grade. This yr for 5th grade we opted for private. Treated for depression/anxiety since beginning of 3rd grade, and needed a different environment. He was even being scammed out of lunch money. How can he overcome social and communicative difficulties, if he’s being bullied? The actual environment was just always too much to bear. PTSD type symptoms while sitting in the lunchroom w/all the kids/noise. Too many kids. He had too much anxiety in the public school to thrive as he needs to.
Now, in private school, he’s beginning to learn the important social and communication skills that he will need to survive in this crazy world. ie: just because someone plays with you does not mean they are your friend. Sounds like a simple thing, but these kids often don’t ‘get it’. We now will have OT/Social skills classes svcs from our public school district, and our private school is amazing. He finally loves school. Fifth grade and in 8th grade math/english.

I have a6 yr. old grandson who has High-functioing autism & has been forced to be mainstreamed by our local school board. He is very intelligent & can be Mr. Charming, talking to whoever is around him. That is unless he is in a crowd or place where there is over-stimulation (like a classroom full of kids, Saturdays in a Wal-Mart, lots of kids getting in his face trying to get him to play fight with him (this acctually happened). He will either try to run away from the situation & if he can’t he’ll hurt someone. We have been trying to get him in an autism school in the local school system for 3 yrs. & the school board refusses to accept his problem. He is now in the state mental hospital to see what they can do for him with medicating him. Been there for 3 weeks & no idea when he’ll get out. The only thing that works is to keep him knocked out with drugs which isn’t good for a child to sleep all day. the only thing that would help is to get him in restricted classes. I hope the school board will listen to what we & the docters have been saying all along & put him in the right school, @ least for now & maybe he can work up to mainstream.

this is a not the way any child should have to live. keep fighting your school system, it may take time but hopefully you will be able to get him in a school that can help him since the public school is failing him.

I was there in your shoes before. I always brought back up with me to my meetings. I had DCF Voluntary Services and an advocate. I fought hard and long and everytime we had a problem i called a meeting. He is now in a specialized school and his self esteem is so high. He never gets into trouble. He has been there for about 3 years now. He is 10 years old. I LOVE his school. The principal, the teacher and the behaviorist are all awesome people. Good luck to you. It is so sad we have to fight so hard.

I am a concerned Grandparent whose Grand Daughter has Aspergers. She was just diagnosed with it recently, she is 9 years old and is in third grade in
washington Primary School located in Huntington Station, NY. They have denied services for her all along, she also was diagnosed with ADHD when she was 3. Academically she is doing great, better than great usually. Socially is her problem and the school feels that they don’t have to help with this aspect of her life. As of right now she is still not receiving any kind of services from them, they just keep telling my daughter that she is fine. Even when she disrupts the whole class and the teacher has to stop the lesson. They call home to tell us but the last words are, she’s fine. She gets bullied off and on in school, but they just look the other way. Where can we go for help to get her in a school for kids with similar problems? So no, I don’t think my Grand Daughter got anything out of being mainstreamed.. I do think if the Principal and or the teachers of Washington would stand up for the rights of the children I think this could become a great school.. As of right now we are not happy with the way things are heading. My daughter is always trying to get what she needs only to be shot down at every school meeting. Where should she go from here??

Your daughter should look into getting an advocate, they are usually great and get what you want, and the school boards hate them, because they know they will be forced to give rights that are deserved! check with your local autism chapter. And tell your daughter to stay strong, and as a parent she can and needs to DEMAND services and keep going above heads until someone listens!

I have four children, my oldest son is twelve, soon to be thirteen has PDD-NOS, high functioning and has been in “mainstream” since the 4th grade. K-3, he was in special ed classroom with about ten other children. He is now in 6th grade, he struggles in math, spelling, and reading comprehension. He does very well in science, and most of his other subjects. My concern with him is the transition to junior high next year, every year, of course the content gets harder for him. I have an appointment soon for his IEP for next year. I am nervous, he hates school as it is and I hate to see him struggle so much, and I know it is not going to get any easier. I am just praying that the transition goes okay. My ten year old son also has PDD-NOS, as well as mild MR, he has been in special education from the start with other children with varying degrees in the Autism Spectrum and Down’s Syndrome. He is high functioning, however very different from our older son. He is still working very hard to learn how to read, his speech is coming along, he now makes much more eye contact. Truly, in five years he has come so far, it is amazing. Two years ago, he started going to gym, library, art, etc. with his mainstrem peers. Last year he started 2nd grade mainstream math, he is always accompanied by one of his special ed teachers so he feels more comfortable and is there to help him as needed. He loves school, loves to learn, the teachers have nohing but good things to day about him. I know the day will come soon when I need to make a decision whether to put him in mainstream ed, and it terrifies me. I do not want him to hate school like his older brother. I am torn, I guess, I want him to reach his full potential. I guess I find myself afraid of what is to come. Our two daughters development was pretty on target. My daughter who started kindergarten this year is in speech, but is doing fairly well. Our youngest seems pretty advanced, she will start preschool in the fall. They are all such a blessing. I just worry about my boys alot, it is so hard to see them struggle, it breaks my heart. I have never really shared our story before, and it will be nice to hear about other people like us and get some advice. Most people just do not understand what it is like to have children with special needs, they do not know how to respond. It is hard to talk to people who really do not “get it”. Thanks for letting me share,and any words of wisdom would be greatly appreciated!!!

I understand completely about your older son hating school. It is so hard when you know they dread every second of it. For me sometimes it kills me to force my son to get out of the car, knowing it is crushing him inside to have to get through and entire day of school. I’m sorry you are feeling the pain and frustration but know I am sharing it with you as I struggle with my son as well. I was able to get a shortened day for my son, and it has seemed to help! Maybe this is something you can try too. Good luck!

Katie

March 30, 2011 at 5:58 pm

Thank you…and good luck to you as well, I know that we are fortunate to have so many resources within our school district, I guess I am feeling a little stressed about my oldest starting junior high, hopefully the meeting about his EIP will alleviate some of it. Thanks again!!!!

I have twin boys, 10 now, and one has Asperger’s and ADHD. My Aspie son has always been mainstreamed since pre-K. We have worked really hard with the school district to work on social and work skills. Now that he is in 4th grade, the maturity and social differences are really starting to stand out. We’re now re-evaluating the assistive technologies available to him in the mainstreamed classroom. Hopefully he will continue to excel in his studies and improve his coping skills!

My son is 12 and PDD/NOS…..he has been mainstreamed since kindergaten, He is now in 6th grade, he is in regular ed classes but gets some of his work modified. His social skills have always been lacking, however I have seen a huge leap this year, its almost as if something has turned on inside his mind! Had this of happened if not in public school….IDK! I can say it takes a lot of work on the parents part to mainstream. It is constant conversation, daily communication, and no matter where we have been, there are those who “get it” and those who don’t! I have met and worked with some of the most talented, understanding, open minded, and kind teachers on the planet, and have also seen some of the most arrogant, militant, closed minded , cruel, teachers! I often wonder if we are doing the right thing, and sooooo often wish there were an autistic geared school. I always say if I ever win the lottery that is what I will be doing with my money! There is no middle ground, its public or home school! I believe there are charter schools in some areas but not where we live and I am told they are VERY expensive. I don’t think we should have to pay more for schooling because our child is special needs, I think that is discrimination. But until that winning ticket comes in, I’m afraid that is our only option!

I mainstreamed my daughter because the school promised me that it would be the best thing for her to get her around “normal” kids. They also told me they would provide adequate supervision. However, the only thing it did was traumatize my daughter, because the other kids in the classroom/lunchroom and at recess took horrible advantage of her disability. The teacher often would leave the kids unattended, and my daughter has been told to stand on a table and lift her shirt, which she did (because she doesn’t know it’s inappropriate). She’s been told to erase the black board, which she did. She’s been told there were magic carrots growing on the playground and spent every recess looking for something that doesn’t exist…and when I addressed these issues, the teacher blamed my daughter. I pulled her out of mainstreaming and put her back in special education, but after a year of more letdowns from the school in that class as well, I now homeschool her.

Elizabeth,
I am so sorry, that is a horrible story. I am so angry reading it! It breaks my heart that a teacher, a principle, and a school district, would stand for this! I am glad you got your daughter out of that environment. Good luck to you and her!

My son is autistic and he has been mainstreamed since 5K. Before that he spent two years in special education. He is in 1st grade now and he is doing great. He has friends and loves school. He goes to resource for an hour a day but he is reading and doing math way above grade level. His dad and I are very proud of how hard he works and what he has accomplished.

The question of “to mainstream or not to mainstream” is a very complex question that requires more than a simple “yes” or “no” answer. There are so many things to consider. Whether a child progresses depends on the child, his or her family, the programs available and the educational team working with your child. We gradually mainstreamed our son, who is living with autism, but only when we thought he was ready for the transition. It was also a transition for his neurotypical brother who would now be attending the same school. Anything worthwhile does not happen overnight. Mainstreaming can be very difficult but with time hopefully it gets better.

We happen to be lucky in that my son has access to the best of both worlds in one school. He is mainstreamed for all the academic areas he needs a challenge, and in a small, seperate language based classroom for the areas he needs a slower pace for.

I put my son in a mainstream, Montessori classroom this year when he started Kindergarten. His pre-school teacher recommended a self-contained classroom with limited amounts of time in regular class. I saw much more potential and advocated for the Montessori classroom with a one on one aid. He has done wonderfully and now at bed time, he reads to me! It has been amazing watching him grow and improve!

Our son is now almost 12. He was mainstreamed after we held him back a year. He did a year of special ed kindergarten, then went and then we mainstreamed him into regular kindergarten. We did this mostly for him socially. He is a year older than most of the kids in his class but socially is about the same age – it was a good decision. He starts middle school next fall and we hope to continue to see the public school here do a good job – they have been great about helping him and he is excelling academically and socially. He still has social skills class once a week and has to work on it, but he is constantly improving. He’s so amazing! God has been gracious in giving us just the right schools and teachers and patients to be parents. Ever so thankful…

We mainstream our Aspergers son. I bring him to school myself (never rides the bus) and pick him up just the same. I get to speak with his teacher daily. So far he’s doing okay. I’d like to send him to a private Chrsitian school, where they have smaller class sizes. Our budget stops that from happening. Other boys do tease my son, so I watch this closely. Mostly, he has good classmates.

We have done both, my son did great in preschool and kinder. But, struggled in first grade. He was moved to a high functioning class and has a regular class assigned for a few hours a day. I had not had any trouble with bulling so far. My heart breaks to read these stories. You need to be constantly fighting to get your Child’s need meet. I spent the first semester of kindergarten in daily meetings because my son had a bad first week and they put him on a part time schedule for “a few weeks” which turned into over four months. I contacted my state autism society for help, they offered advise on who to contact in the school board and which words are key to say. Such as my child is being denied is right to appropriate education. He got a shadow the next day. His IEP group has been great, but the school district was dragging it’s feet in helping. Don’t stop fighting and get an advocate to help.
Your Child’s needs will change and you need to act fast when you see that your child’s need are not being met. Time is precious in education, and your child has every right to be educated. Yes, it causes the schools to spend more resources, but we pay taxes just like everyone else or even more.

I just want to comment on the use of the term “mainstreaming.” That term arose from the 1970s and is very backwards in its meaning, with the premise of “Is the child ready to be educated among general education peers?” instead of “Is the school’s community accepting of all students?” The term now is simply “inclusion,” or rather, when students are instructed in a less restrictive environment (both of which are the terms stated in IDEA). I am disappointed that Autism Speaks, as an organization that is committed to increasing awareness and bringing the most current information around the world about people with autism, would use such an antiquated term.

Our son had been included in a typical classroom for a long time now. He is almost 11 years old and he has had all sorts of different programs. We are a military family, so we have lived in many places. His current program works very well. He has some attention issues and has some trouble staying on task in large group instruction. He is included in the typical 4th grade class for everything but math, reading, and some writing. This works well for him.

I have been really thrilled to watch the story of a family raising a child with an ASD as I have a 5 year old with PDD-NOS and I think we are all connected to TV shows when they relate to our own life. My son is high functioning and has made tremendous progress with early intervention. He is currently included in our local public school kindergarten class and the teacher says he is in the top third of his class academically. This May, his “developmental delay” label must be dropped and we have decided not to test him for the “ASD label” because both his speech & OT therapists do not think he will meet the criteria. So the decision is to do “no further evaluation” so that he can continue to receive services based on his original speech delay by “flying under the radar” because they know he needs them. My concern stems around the fact that the teachers at his school are not educated on how to help a child with autism learn & his teacher has daily struggles with my son refusing to do work and keeping him on track because of his anxieties. They say he will be in a “fuse” class in 1st grade which is co-taught by a gen ed teacher & an ESE teacher – but there are only 3 ESE teachers for the whole school so how do I know that person will be in his classroom when he may most need it. We are currently on the waiting list for a local charter school that specializes in children with neurological learning disabilities. Their “mission” is to provide quality & grade equivalent academics while meeting the particular learning needs/methods of the child, for ex they combine classes K-2nd so that if a kindergarten has the reading abilities of a 2nd grader he will have those challenges available to him (vice versa if a 2nd grader has a lower ability). Every teacher at this school is qualified in ESE & they have weekly social skills classes as well. My hope is that he wins the lottery this year for attendance as I wonder if he is doing so well in public what heights could he reach with educators who actually understand how to help him learn at his highest capacity while also having a focus on much needed social skills…..so why when I watch the show last night or have other people tell me “mainstreaming” him is the best do I get so confused?? I know the logical answer is I should do what I think is best for my son but the emotional part of me stresses over the fact that I will obviously not always be sure what that is; I just have to use my best judgment & try & adjust as necessary. As is always, there is never any black & white answer (I literally found this blog by asking the computer for one!). OK, maybe this was a rhetorical post….thanks for listening.

we live on a military base so they do good in mainstreming kids. . also i have another issue. when my son get mad he will cuss at us. He is 7 and Is autisc, and they think he might have Asberger’s Syndrome. he also has Pdd.

Right now we are doing a combination of things. My son is in a mainstream gymnastics at The Little Gym and a “special education” preschool. For us the combination is working very well. The gym is understanding of autistic kids and really does everything that can to keep him from wandering off and involved in group activities.

This is a great forum! I am glad I found it. Our son is almost 12, non-verbal and has lots of sensory issues. He has very little functional language but is doing well on his receptive language. This is his first year in middle school and it’s not going great. They are trying to mainstream him with an aide in the typical classroom. He can not do the work the typical teachers are teaching so he works with his aide on ‘his’ projects. I observed one day and I could tell immediately, this was not the best place for him. I know every child is different but I am going to suggest to have him more in the contained SPED room. As well, we are seeing much more biting (of himself) and frustration this year (new school, new team, puberty, etc.) … there are just so many things! I’d love to hear from some parents with lower functioning, non-verbal kids with autism. Thanks!